Tuesday, July 19, 2011

Hi and This is Me!

I'm Amy and I suppose if you read the title of my blog you know I'm disabled. It's not a new thing, I always have been...well, almost always. I was born with a rare bone and endocrine disease but I didn't really show up until I was about age 4. There were a couple of indication when I was younger but my mom ignored them! But my parents couldn't ignore when I started walking like a bow-legged cowboy! They figured they'd better find a doctor who could tell them what was going on with my bones. That turned out to be no easy feat! Although I was diagnosed relatively quickly with McCune-Albright Syndrome, finding a doctor close to home who was willing to try treating me was more difficult I'm told. It kind of weird since my family lived 40 minutes from NYC...seems to me if you cannot find a doctor to help you in all of Manhattan and surrounding areas, you've got a problem! My parents found a great doctor after searching for a year. Then the period of annual or bi-annual surgery began. When I wasn't having surgery my life was pretty normal because my mom didn't want to treat me like I was disabled at all. That was really cool for the most part, although there were some problems which I'll talk more about another time! I went to college which was fantastic and was even able to get my law degree. I had to have major surgery 5 days after the Bar Exam but, fortunately, I passed!

My first job out of law school was working as a prosecutor which I absolutely loved. But about 2.5 years into that job I started having problems with my bones bowing and chronic pain. After 3 years I left the prosecutor's office, reluctantly, for something less stressful: the department of social services where I especially liked the Child Protective Services work. But my bones and some other health systems (respiratory especially) didn't cooperate. By 2001 I'd "retired". I use a wheelchair now and I'm on oxygen 24/7.

I haven't handled not working very well. I've been depressed and had some other health problems, mainly asthma and pulmonary hypertension.. I always told myself I was going to get involved advocating for disabled people and speaking out about things like employment, access and insurance. I don't always feel that, as a disabled person, I'm taken seriously. I'm irritated with myself for taking such a long time to start talking. I've had a few run-ins with people lately who didn't treat me well because I was in a wheelchair...for instance, a movie theater wouldn't let me take my wheelchair in to see Black Swan! Rather than feel badly about myself, I was irritated....okay, I still felt a little badly about myself!

So that's what this blog is all about...being disabled and belonging in this world! I know there are a lot of people working to help make society a place where it's easier for anyone who is disabled in any way to fit in and get along. Please tell me about you, say what you think and please correct me if I've said something wrong!


bermudaonion said...

Good luck with your new blog, Amy! I hope you find a new community of support through it.

Anna said...

I'm sorry you've had to go through all this, but you are so eloquent that I think you would be a wonderful spokesperson for the disabled.

Amy said...

Bermudaonion: Thank you for being my first commenter! I hope so, too! I'm going to keep plugging away!

Amy said...

ANNA: Thank you for visiting and commenting! I'm nervous about this new venture but felt I had to try! I really appreciate your support!

farmlanebooks said...

I've just read every post in your new blog and I'm feeling a bit emotional. I didn't realise that you'd been through so much. I knew you were disabled, but wasn't aware of the pain and suffering. ((BIG HUGS)) I really hope that this blog helps others in the same situation and makes other people understand a bit more about your conditions. Good luck with everything.